About this Show

Religion Ethics Newsweekly

Sequencing the Genome; Lillian Daniel News/Business. (2013) Guidelines for genetic testing; the Rev. Lillian Daniel. New. (CC) (Stereo)

NETWORK
PBS

DURATION
00:30:00

RATING

SCANNED IN
San Francisco, CA, USA

SOURCE
Comcast Cable

TUNER
Channel 15 (129 MHz)

VIDEO CODEC
mpeg2video

AUDIO CODEC
ac3

PIXEL WIDTH
528

PIXEL HEIGHT
480

TOPIC FREQUENCY

Liam 5, America 5, Amanda 4, Dr. Krantz 3, Washington 3, Us 3, Wade 2, Kim 2, Roe 2, Brooklyn 2, Philadelphia 2, Mahony 2, Kathleen 2, Severson 2, Chicago 2, Illinois 1, Us At Pbs.org 1, New Bo 1, D.c. 1, Diabetes 1,
Borrow a DVD
of this show
  PBS    Religion Ethics Newsweekly    Sequencing the Genome; Lillian Daniel  News/Business.   
   (2013) Guidelines for genetic testing; the Rev. Lillian Daniel....  

    January 27, 2013
    10:00 - 10:30am PST  

10:00am
10:01am
coming up, lucky severson reporton genome sequencing -- finding a child's entire genetic makeup, who should be tested,
10:02am
and how much should parents be told. and a prominent pastor pushes back at atheists and others who have sharply criticized the christian church. >> and how dare you presume to paint me with that broad and offensive brush? ar founding f "rigion & ethics news weekly" is presented by the indianapolis family foundation dedicated to its founders at tris tann religion, community development, and education. additional funding also provided by mutual of america, designing customized, individual, and group retirement products. that's why we're your retirement company. and the corporation for public broadcasting. welcome.
10:03am
i'm bob arnety. it's gd to have you with us. resint oma ban his second term this week with pomp, circumstance, and some prayer. in longstanding american tradition, religion had a high profile in many inaugural activities. kim lawton has more. >> reporter: before monday's public swearing-in ceremony, the obamas attended a special worship service at st. john's episcopal church. protestant, catholic and jewish leaders were part of the service, which was closed to cameras. then, the public ceremony began with an invocation by myrlie evers-williams, widow of slain civil rights leader medgar evers and the first laywoman to give an inaugural prayer. >> we invoke the prayers of our grandmothers, who taught us to pray, god, make me a blessing. >> reporter: music included the brooklyn tabernacle choir.
10:04am
>> the oath i have sworn before you today, like the one recited by others who serve in this capitol, was an oath to god and country. >> reporter: the president cited god many times in his address. he laid out a liberal vision to the nation, which included an explicit endorsement of gay rights. >> our journey is not complete until our gay brothers and sisters are treated like anyone else under the law. >> reporter: that was praised by some faith-based leaders who called this "the most lgbt-friendly" inauguration in history. but religious conservatives were critical, calling the statement "strident and divisive." many evangelicals are still upset that reverend louie giglio, who was originally set to give the inaugural benediction, withdrew because of controversy over a sermon against homosexuality that he gave in the 1990s. st. john's rector luis leon offered the benediction instead. evangelicals did participate in the interfaith inaugural prayer
10:05am
service at washington national cathedral on tuesday. with the obamas and bidens in attendance, representatives from a broad array of religious traditions prayed for the nation and its leaders. the service included protestant, catholic, jewish, muslim and sikh participants. a major theme of the event was finding a common vision in a nation that remains deeply divided. >> kim, for all the religious diversity at the cathedral and at other events, the inauguration itself, the main event, was remarkably protestant only. a protesta giving the invocation, a protestant doing t benediction. did you hear any complaints about that? >> reporter: i didn't hear any complaints, probably because there was so much diversity at some of the other events. the last few inaugural events
10:06am
have been very protestant in terms of the religious leaders who participated. that hasn't always been the case. during fdr's time, there was a catholic. there have been jewish leaders, greek orthodox leaders in the past who have done it. >> and the inauguration itself is always such a reminder of the intertwining of religion and government, the language, so many references to god, especially in the music. >> reporter: the civil religion, america's civil religion, is always at the forefront, what people call this idea, also people call american exceptionalism, that god has some kind of special, chosen place for america. president obama, i thought, in his inaugural address also really harkened to that when he talked about this creed that we have, a national creed based on the declaration of independenc -- life, liberty and the pursuit of hpiness. it was interesting this time around, a lot of religious conservatives talk about god has
10:07am
chosen us as a people, but to have a liberal put god with that liberal agenda was something interesting. >> many thanks, kim. advocates on both sides of the abortion debate held events in washington this week to mark the 40th anniversary of the supreme court's roe v wade decision legalizing abortion nationwide. on friday, tens of thousands of abortion opponents attended the annual march for life. earlier in the week, supporters of abortion rights, including some religious groups, gathered at a candlelight vigil outside the supreme court. according to the most recent poll from the pew forum on religion & public life, 63% of americans do not want roe v wade overturned. that number has been consistent for the past 20 years. close to half of all
10:08am
americans -- 47% -- say they psonally liee abtion i morally wrong. the retired catholic archbishop of los angeles, cardinal roger mahony, apologized to sex abuse victims after newly released documents revealed he and other church officials actively covered up abuse by priests. internal memos from the 1980s show mahony tried to prevent police from finding out about the abuse. he also warned one priest from his archdiocese to stay out of californa to avoid prosecution. abuse victims want to see mahony and others punished. the documents, more of which will be released in coming weeks, were made public as part of an earlier lawsuit that led to a $600 million settlement for 500 victims. in new york city, an
10:09am
ultra-orthodox jewish counselor was sentenced to 103 years in prison for sexually abusing a young woman who had been sent to him for religious guidance. the counselor and victim were members of the satmar hasidic sect, which often discourages members from going to civil authorities. earlier, a prominent group of orthodox rabbis condemned any efforts to withhold the reporting of abuse to police. we have a special report today on the ethics of genome sequencing, finding out a child's entire genetic makeup even before he or she is born. that cld reveal defects that might cause dea or handicaps lar in life. researchers say they want guidelines. should doctors tell parents everything they find out? would parents want to know? lucky severson has our story. >> reporter: this is liam. everybody likes liam.
10:10am
hard not to, that smile under the hat that he never takes off. and this is his loving mom, kathleen hilferty, who knew from the beginning that something was terribly wrong with liam. >> i knew something was wrong because of the breathing. he couldn't eat at the same time. he couldn't drink and breathe at the same time. >> reporter: liam is 12. this is his twin brother, joseph, who is about twice as big as liam. from day one, his mother was desperate to find out exactly what was wrong with liam so she could get him treated. >> i wanted at least to have a name to it so i could say i did the best possible thing for my child or i gave him the best possible care. >> reporter: for 12 agonizing years, kathleen was looking for an answer and recently got one from dr. ian krantz at the children's hospital of philadelphia, who had sequenced liam's genome. >> and we not only found an answer in him but we found the same answer in a number of other children, and we have a new diagnosis. we are understanding it, how to treat it better. >> reporter: the discovery of
10:11am
liam's genetic defect underscores how rapidly and how important the science of sequencing the human genome has become in modern medicine, especially when it comes to children. when researchers first mapped the human genome, it took almost 10 years and cost $3 billion. that was less than ten years ago. today the process takes three weeks and the pre tag is rapidly approaching $1,000. nancy spinner heads the division of genomic diagnostics at children's hospital of philadelphia. >> for parents whose kids have some serious birth defects or congenital abnormalities, you really want to understand what's causing it. you want to know is there something that you should be doing. i think moms feel very guilty because when they have a child with a birth defect, then they say, "was it something i did in the pregnancy?" >> reporter: dr. krantz and nancy spinner are a husband and wife team who are the principal investigators of federally funded research to help develop guidelines r doctors an patients.
10:12am
unlike earlier genetic tests, sequencing the genome reveals a child's entire genetic makeup, including their predisposition to disease that might occur later in life. and it raises some ethical questions -- what should parents know, and what knowledge might cause more pain than gain? >> now we are looking across the entire genome, and we have this enormous challenge, how much of it should we report back, what should we tell people, how are they going to use this information? >> the problem we are having now is that there are no guidelines to say what should be reported back, who should be tested, who shouldn't be tested. >> reporter: who should be told? >> who should be told about this information, exactly. we are very good at diagnosing and not so great at treating genetic disorders or preventing things from happening later in life. but i think knowledge is powerful and having information can in the short term affect parental decisions, reproductive decisions, and can affect lifestyle choices later on.
10:13am
>> there have already been examples of people who havbeen tested, seen a predisposition to diabetes, and start to immediately get screened for it and find out that they have diabetes much earlier. that can save many dollars in health care costs, because you can treat things before they become bad. >> reporter: scientists say that for diseases diagnosed early and then treated, sequencing can indeed save lives. but should doctors tell parents when tests show that their child will eventually fall victim to early adult onset disease like alzheimer's, for which there is no known cure? >> and we have already seen some cases where we find some things that are damaging that tell you that you're very, very high risk for an adult onset disorder that's going to be bad and there's no treatment, so we can't really think of a reason to give that information to people. and i think right now we are trying to learn what should we be giving and what shouldn't we
10:14am
be giving, because our main goal is not to cause any harm or additional stress to families. >> reporter: the hunter family in new jersey wanted any information they could get about tir 14-year-old daughter, amanda. she suffers from crohn's disease impairment, and her condition appeared to be regressing. like all children, amanda's genome contains 22,000 genes that hold tantalizing information that could save or prolong her life. her mother, laurie, wanted some answers. >> i love that people are able to say, "it is what it is" until you are living in that world. and that motherly instinct tells you something's not right. you're going to stop at nothing until you find out what you can do to help that child. >> reporter: what if you test for one thing and find something else? when amanda's genome was sequenced, doctors discovered what they call an "incidental finding," something they weren't looking for, a deletion, seven genes missing from a chromosome.
10:15am
the deletion didn't explain her impairment, but it indicated she was susceptible to cancer. and then her mom got some news that may have saved her life. >> when amanda was diagnosed with that deletion, the natural course is to test the parents, so her father and i were tested, and it turned out that i carried the same deletion. so i've gone through the same series of tests. i had a full body mri. they found a lesion just above my diaphragm. >> reporter: it's a slow-growing cancer and treatable if detected early enough. >> when they told me that what they found had no explanation for the issues i was concerned about, my immediate reaction was i wish i hadn't know, but now, yes, i am glad because the condition is a cancer, you know, cacauscancerous mors, the mors must be surgically removed in order to avoid further complications, and i want to be here for my children. i need to be here for my children. >> reporter: she gave birth to
10:16am
her second daughter, kailyn, after undergoing an amniocentesis which erroneously showed that kailyn was normal. laurie knew the first week that kailyn was not normal, and after doctors sequenced her genome, she learned that kailyn has a rare nonhereditary disease called wolf-hirschhorn syndrome. her 4-year-old son ryan's genome has also been sequenced, and he appears to be in good health. for some parents, gaining knowledge of their children's genome before they are born would help them be better prepared in case their child has special needs, but it will undoubtedly encourage some parents to choose abortion. >> we have some patients who we have followed who have used it for prenatal diagnosis in such a way to avoid having affected children. >> reporter: dr. krantz and nancy spinner are most concerned that the science has few guidelines, including safeguards for patients' privacy. >> we live in a capitalistic society. often when something is technically feasible and
10:17am
fiscally feasible, it is offered, and there are for-profit companies now who are offering this testing to the individual so you can go out yourself and pay the money and get your genome sequenced. the problem now is it's the thousand-dollar genome, but it's the million-dollar interpretation because you can get the sequence but understanding what it does takes hundreds of hours of manpower to interpret and understand. and we're not even that good at it. >> reporter: as for dr. krantz and hiwife, nancy, and their thr children -- >> i have to say that neither nancy or i or anyone in our family has had their genome sequenced yet, and not because we wouldn't be interested, but i don't think we really subscribe to the recreational sequencing of genomes, but if there was a medical concern, i don't think we would hesitate. >> reporter: for kathleen, even though the news about liam was not good, just knowing seems to have made a huge difference. >> i guess a miracle, i would say, because i waited so long, and as he was getting sicker i didn't want him to pass away,
10:18am
because then i would feel so guilty that i didn't do everything i could ve. now that i have a name, i know there's no cure for him, but he can help so many other kids. >> reporter: it's the promise of help for kids like liam that drives the science that is going so fast the road map with guidelines and warning signs can't keep up. and as the technology progresses, the ethical issues will become even more difficult. for "religion & ethics newsweekly," i'm lucky severson in west chester, pennsylvania. as we have reported in otr programs, a recent poll by the pew research center found that nearly 20% of all americans -- 1 in 5 -- say they have no religious affiliation. many of them are people who say they are "spiritual but not religious." they may believe in god, but they don't want anything to do with organized religion. meanwhile, some books by
10:19am
prominent atheists have condemned all religions. these criticisms have offended many religion leaders, among them t reverend lilliadani, who has a book out this month, called "when spiritual but not religious is not enough." full disclosure -- i wrote a blurb for the cover. at the first congregational church in glen ellyn, illinois, an upscale suburb of chicago, lillian daniel is the senior minister. she says she's had enough of outsiders who bash the church and of church people who don't protest. so she is pushing back herself, in a new bo, in articles, and in sermons she preaches as a guest minister around the count. at howard university in washington, d.c., recently, daniel railed at writers and others who, she says, have blamed the church for many of the world's biggest problems. >> what church community are you describing? because it is not mine.
10:20am
and how dare you presume to paint me with that broad and offensive brush? so why is it that when the spiritual but not religious complain about christianity, why don't we get mad? why don't we tell em a different story, of a progressive church where your questions are welcomed, where we worship a god who invented us and not the other way around. >> daniel's audience included the dean of the howard chapel and howard's president and his wife. she referred to them when she acknowledged her own part in what she calls america's culture of narcissism. >> in which it is so easy to think, "it is all about me." so much so tt when theean told me quietly that the president and first lady were here today, you know where my mind went. i'm from chicago. i said, "barack and michelle?
10:21am
here?" >> but daniel's humor is not always so gentle. she ridicules people she says try to make up their own god and their own forms of worship. >> often some shallow combination of exercise and caffeine, coffee shops as spiritual community, hikes as pilgrimages, "the new york times" as sacredext, and sunsets -- don't ever forget the sunsets. these people are always informing you that they find god in the sunsets. well, excuse me, as if people who go to church don't see god in the sunset. you know my take is that any idiot can find god in the sunset. what is remarkable is finding god in the context of flawed human community and a tradition bigger than you are with people who may not reflect god back to you in your own image. part of the nature of religion, so much beat up on in our society, part of the nature of religion is that it delirs a message that is like sandpaper against the culture of
10:22am
narcissism. it is not all about you and, no, you cannot make it up. the beauty of a long tradition is that it is bigger than anything we can do by ourselves. >> another favorite target for daniel are christians who seem to her confused about how god works. >> about a year ago, perhaps you remember this from the news, a man who was alleged to be tim tebw's stoannounced to the world that he knew why the denver broncos were 7-1 since installing tebow as quarterback. he said it's not luck. luck is not winning six games in a row. it's favor, god's favor. sorry, but that pastor seems to have skipped his theology class. because saying that all those touchdowns were a sign of god's favor is what i like to call
10:23am
touchdown theology. and in my book it gets a grade of "f." surely there are other christians praying just as hard on other football teams. and what about the players who follow other religions? that was personally embarrassing to me as a person of faith. but i also could not help but notice the glee with which the media glommed onto this touchdown theology. remember that? they were writing about it right and left. it was something to mock in the christian family, another reason to see christians as stupid and simpleminded. >> along with daniel's complaints about the church's critics, she also has great sympathy for those some churches have hurt. >> some people don't like it because they really have been wounded by a church at some point or they have been a part of organized religion where they've been damaged and hurt in profound ways. all you can do is respond
10:24am
compassionately and just be so sad that that happened. >> still, she insists, most of the attacks on the church are unfair. where i get frustrated with some of the writing that's being done by the atheists now is that they present a very denigrating and insulting vision of the church. i mean, they take, you know, the stupidest example you could find and they say that's christianity. so, you know, the idiotic minister who wants to burn the koran, you know, and they say that's what christianity looks like. these are intelligent writers who should know better. other people get angry because they're sort of like how dare you make a positive case for what youe doing? and that's the sloppy thinking where you are "shoving it down my throat." you can make an intelligent argument about why religious community matters without saying the other person's going to burn in hell. >> daniel wishes every critic would learn more about the church they're criticizing.
10:25am
>> it's like we have this amnesia, like, really, nobody in past generations studied this stuff and put some thought into it and it might be worth reading? oh no, it's just i can kind of get it on my own. and there's this sort of almost worshipf our own feingsnd not much respect for traditions and experience and wisdom from outside ourselves. >> daniel says it's normal for some people, especially the young, to turn their backs on religion for a while. >> what i think is sad is when people kind of get stuck there and they know they're missing something but they've got this picture of religious life that it's judgmental and shaming and homophobic and sexist, all these things, and i just want to say, look around you. therere so many beautiful options in the religious landscape. you don't have to be out there on your own. >> which was the message at the close of her sermon. >> life is not a picnic, and the
10:26am
people who finally dig in and put down roots in one tradition bigger than themselves figure that out. there is a middle ground between the rigidity of touchdown theology and the superficiality of make-it-up-yourself spirituality. it is called a mature faith, practiced in community over time, reasonable, rigorous, real, grounded in tradition, centered in worship, called to serve and free to dream. amen. ♪ finally, on our calendar, the jewish holiday of tu b'shevat began at sundo fray. called new year's day for trees,
10:27am
it's become a special day for efforts to protect the environment. and, that's our program for now. i'm bob abernethy. you can follow us on twitter and facebook and watch us anytime on the pbs app for iphones and ipads. there's always much more on our website. you can comment on all our stories and share them. audio and video podcasts are also available. join us at pbs.org. as we leave you, the brooklyn tabernacle choir as it performed "the battle hymn of the republic" at president obama's second inauguration. ♪ his truth is marching on his truth is marching on ♪ major funding for "religion & ethics news weekly" is
10:28am
provided byhe lily endownt, dedicated to its founders at tristan religion, community development, and education. additional funding also provided by mutual of america, designing customized, individual, and group retirement products. that's why we're your retirement company. and the corporation for public broadcasting.
10:29am

Terms of Use (10 Mar 2001)